LisaFriday Posted July 6, 2010 Report Share Posted July 6, 2010 Well, I was on my way to Seattle to Camp Cushie this coming Sunday, July 11, 2010. Then, if everything went my way, I was having my second pit surgery the following Tues, July 20. When the news got out in my small town here in Alabama that I was having another operation, a dear friend of me and my family (a well-respected surgeon) called me and asked to see me immediately. So, last Thursday I went to his office and he explained that he has been compiling research for the past 7 years. He is convinced that Fibromyalgia is the cause of my Cushings Disease. He never once told me that I do not have Cushings...that was refreshing. Anyway, he asked that I try a medicine regimen that has been successful for most of the 100+ patients in his study. The regimen is a combination of Celebrex (or something similar) and Mobic (or something similar). He has asked that I take this for six months and see if many, if not all, of my symptoms subside or become bearable. Because of the respect my family and I have for him, I began taking the medications: Famciclovir 250mg twice a day, and Meloxicam (MOBIC) 15mg once a day. He said I could and should go to Seattle as planned as soon as the six month trial is over if I still feel that I need to go. He said fixing the Cushings would be great, but, he felt it would be a temporary fix, and that this would, hopefully, be forever. After reading his research paper for the fourth time (much of the medical jargon was completely over my head)... I began to think about how many of us on this board are having multiple Pit Surgeries, then BLA's... and we still feel 'yucky'... He hated to think of me having to replace hormones, etc for the rest of my life, if this were the basis of my problem. He is the first Doctor that has ever diagnosed me with (or even looked for) Fibromyalgia... I always thought that Fibromyalgia was a 'joke amongst the medical community'. He has found a link between the HSV I virus (which 90% of the population has b/c of the chicken pox vaccine/shingles/mono,etc.) and Fibromyalgia. This may be something that may help some of us here. I just thought: What if God has sent this to me as an answer to this nightmare... I have been praying for a sign as to go to Seattle or not, and then a DOCTOR CALLS ME OUT OF THE BLUE!!!! I feel that I MUST give this a try... I will keep you all posted on my progress on this thread... FYI: His name is DR. William (Skip) Pridgen. He is located in Tuscaloosa, AL. If this is something that interests you, go to: http://tuscaloosasurgery.com/research.htm or PM me and I will give you his phone number and more up to date info... May God Bless you all, Lisa in Alabama Link to comment Share on other sites More sharing options...
judycolby Posted July 6, 2010 Report Share Posted July 6, 2010 Well, as long as the meds you take can turn off an ACTH secreting tumor and lower your cortisol but not too low & then keep it in range, he might be right. Are you going to have levels checked? I have always thought that for people with Cushing's the fibro was interrelated. Judy Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club happy41 Posted July 6, 2010 Member of the 1000 Post Club Report Share Posted July 6, 2010 Reputable research includes appointing an instituitional review board and reporting it in a registry of clinical trials. Clinical trials are closely regulated. Normally, clinical trials have a "principal investigator" who is someone who specializes in the condition being studied. The reference here looks to me to be a person who is a general surgeon who does abdominal surgery. This doesn't look to me like someone who would normally be supervising a Cushing's study, unless maybe related to techniques for adrenalectomy. but he seems to be more of a surgeon you would see to have your hemorrhoids fixed. http://www.ratemds.com/doctor-ratings/1348...CALOOSA-AL.html I guess I would be really surprised about a doctor in Alabama that nobody has heard about having a study with 100 Cushing's patients in it. Dr. F's slides at the Magic Foundation two years ago covered something like 80 patients. So, this guy would have more cushing's patients than Dr. F and nobody has heard of him????? I have not seen any clinical trial reported in the NIH database seeking to evaluate the use of celebrex and mobic to treat Cushing's disease. I have spent an enormous amount of time looking at what has been published in the medical literature related to cushings. I have never seen an article equating Cushing's with fibromyalgia. In fact, from what I understand, fibro patients can have LOW cortisol, not high. As I understand it, Fibromyalgia is primarily a neurologic disorder with respect to how the body perceives pain. It is related to something called "substance P." I has nothing do to with Cushings. So I have no idea of how fibromyalgia would "cause" Cushings. So, I guess the real question is whether you think you never had cushings and want to investigate other diagnoses. Whether that makes sense depends on how strong your original test results were and if you think that your symptoms are now different than what they were before surgery. And what your current test results are. It sounds to me that the guy is really telling you that he doesn't think you have Cushings, but have fibro instead, and wants to treat the fibro. you are scheduled for Seattle this weekend. Why not go to seattle, see what your numbers are, and make an informed choice based on the test results? Has this guy actually examined you and seen your medical records??? Maybe you can post his research and folks can make more sense of what the guy is saying. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club happy41 Posted July 6, 2010 Member of the 1000 Post Club Report Share Posted July 6, 2010 Here is the site for clinical trials. www.clinicaltrials.gov After even a successful Cushings surgery, one can (will) have muscle pain. That doesn't mean that you have fibro. There is something called steroid myopathy (which you can have if you still have Cushings) and it takes time to heal. If you are growth hormone deficient or thyroid deficient, you will have muscle pain and weakness and that will be fixed with appropriate hormone replacement. One of your posts indicated that the surgeon took most of the pit. Are you sure that you are not hypopit? Are you sure that you are not really, really low on thyroid. You can get pretty sick if that is not treated. Are your current doctors smart enough to test something beyond TSH? Fibro is typically treated by a pain specialist, a rheumatologist, or a neurologist. I don't understand why a general surgeon would be treating it. Link to comment Share on other sites More sharing options...
hramage Posted July 6, 2010 Report Share Posted July 6, 2010 I'm not sure if this doctor is saying that ALL Cushing's disease is caused by fibro but if he is I think he's incorrect. I never had the joint/muscle pain with Cushing's despite having it for at least 12 years and weighing 380lbs at my heaviest. In fact, it's been a HUGE struggle now after surgery dealing with the pain that I feel. I never had symptoms of fibro but I definitely had Cushing's. If anything, I would suspect that Cushing's may cause in some people fibro like symptoms. Not the other way around. It may be tempting to hop right on board with this doctor because it seems like a "sign." If it were me, I would go to your scheduled Cushie Camp and sort of finish what you started with your first surgery. I don't know this doctor or anything about him, but if I recall, your first Cushing's surgery did not go well and it seems your surgeon might not have really been a Cushing's expert. I think you might be making the same mistake twice if you go through with this new doctor.... Just my two cents worth... Link to comment Share on other sites More sharing options...
Over 2000 Posts lydia Posted July 6, 2010 Over 2000 Posts Report Share Posted July 6, 2010 I have no fibro but do have cushing's, so the theory does not work for me. Link to comment Share on other sites More sharing options...
lescor3 Posted July 6, 2010 Report Share Posted July 6, 2010 I wish you well, the information was interesting. My doctor put me on Mobic for fibro too, not with Celerbrex though. Unfortunately it didn't seem to help with my pain much but maybe with the other medication it will work. I read his research paper and it talks about being on strong antibiotics for 6 to 40 months ( I think thats what I read ), is he going to have you on these too? It's very interesting. Thanks! Leslie Link to comment Share on other sites More sharing options...
SusanM Posted July 7, 2010 Report Share Posted July 7, 2010 I had pituitary hyperplasia that caused the Cushings. There is no link between hyperplasia and fibro. Link to comment Share on other sites More sharing options...
LisaFriday Posted July 7, 2010 Author Report Share Posted July 7, 2010 HAPPY 41 I am so so so sorry that I made it sound like he was doing a clinical trial on Cushings... I did not mean that at all... in fact, he knows nothing about Cushings... I never meant to lead anyone to think that I was in a 'clinical trial'... in fact, this is a research work in progress... This research is something that has just 'fallen into his lap' because so many of his patients have Fibromyalgia. The more he studies, the more he finds a link between the HSV I and FM... So, He just feels that many of my symptoms are similar to people in his study that have HSV I and Fibromyalgia... He was hoping that this six month medication regimen might help me not have to have another Pit surgery... I am truly just grasping at straws. For five days I had been praying and praying when a friend texted me out of the blue asking me to contact our surgeon friend ASAP! I know I need to go to Seattle, but my family is so encouraged by our family friend trying to help me without having more surgery. I am so tempted to get on this airplane on Sunday. I am so torn. I have a ticket, a room at the hospital's inn and it is all paid for... Why can't our families just trust that we know our bodies? Why can't this stupid Cushings disease be as well known as Cancer/Diabetes/etc? People understand those issues and are empathetic to them, but with Cushings they are just perplexed! Hell, my family and friends are now thrilled I have Fibromyalgia because they have at least all heard of that! Again, I am so so so sorry for making it sound like a Cushings Clinical Trial... Take care to all of you, Lisa in Alabama Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club happy41 Posted July 7, 2010 Member of the 1000 Post Club Report Share Posted July 7, 2010 I would go to Seattle if I were in your shoes. I would get what testing I could get done and then I would take some time to digest it and make a good decision that you feel comfortable with. I don't think you have a doctor nearby who has a clue. I went through your posts this afternoon. By what you said, you had a bypass surgery without the doctor doing the workup he needed to do. I only saw two positive test results for Cushings -- while they were diagnostic, I don't think I have seen anyone here cleared for surgery on just two test results (IPSS is not used for diagnosing Cushings, it is used to figure out if the cause is pituitary or adrenal). The surgeon did what you said is a very aggressive first surgery. The more aggressive the pit surgery, the more likely you are to lose pituitary function -- growth hormone, female hormones and thyroid hormones. I have not seen you post any test results checking how you are doing on those hormones. I assume that nobody is checking them. Growth hormone and thyroid hormone deficiencies can cause substantial fatigue and muscle pain -- I know because I have experienced both. symptom-wise they and fibro can seem similar, but treatment-wise, they are two very different things. First of all, you need to have a diagnosis that is based on facts, including solid labwork. If all you get in Seattle is someone checking your pituitary hormones and seeing where you stand there, the trip is worth it. You may find out that you are very growth hormone deficient and that is your main problem. If you are not getting any thyroid replacement and have lost TSH, you really need to get replacements. If you get some better data on where you stand in terms of cushings, all the better. With respect to a failed surgery (or cushings in general), from my experience it is very hard to predict how long you can "hold on" before you have problems. I had several endos think I did not have cushings "bad enough" to warrant my first surgery. In retrospect, was clear from how poorly I tolerated surgery that it probably would have been better for me to have gone on keto and improved my condition before having surgery. My BLA I tolerated the surgery very, very well. But, even though I didn't have fantastically bad test results, my kidney function became impaired -- enough to meet the diagnostic criteria for chronic kidney disease. I goofed around with not so great local doctors after the first surgery and I really regret it. You may find yourself having waited six months for this doctor's treatment, gotten sicker and maybe then you won't be well enough to make the trip to Seattle. You never know. Make sure YOU feel comfortable that YOU understand what the doctors are recommending, why and that you feel comfortable that they have the expertise to make good recommendations. You are the person who has to live with their decisions, not them. Hang in there!!! Link to comment Share on other sites More sharing options...
zhen Posted July 7, 2010 Report Share Posted July 7, 2010 Virus has been speculated as causal for fibromyalgia and chronic fatigue syndrome nearly since the outbreak at Incline Village, Nevada in 1984. About CFS Website More recently it was discovered by Whittemore Peterson clinic that a retrovirus called XMRV is associated with CFS. The announcement was October 2009. WP Institute Website A new study from Sweden ascribes Fibromyalgia as being caused by HYPOcortisolism. This is opposite of Cushing's. Pubmed I think you should keep your date with camp cushings. If you find a proven adenoma that causes hypercortisolism, it's not going to be fixed by taking anti-inflammatory medications. You'll end up suffering an additional six months for nothing. The problem is that symptoms of fatigue, muscle aches, brain fog and so forth are non-specific. Many conditions have the same constellation of symptoms. If you get put in the wrong bin because your symptoms are similar to other patients, you won't get better. We could turn this around and say fix the Cushings. Then the immune system will control the HSV.... Link to comment Share on other sites More sharing options...
Over 2000 Posts missaf Posted July 7, 2010 Over 2000 Posts Report Share Posted July 7, 2010 I have a friend who is working with a researcher at Harvard in regards to her FM starting directly after she contracted Lime Disease. FM as a root to Cushing's? Uh, no. Link to comment Share on other sites More sharing options...
NancyJ Posted July 7, 2010 Report Share Posted July 7, 2010 I am so tempted to get on this airplane on Sunday. I am so torn. I have a ticket, a room at the hospital's inn and it is all paid for... Get on the plane. Celebrex and Mobic are anti-inflammatories and will not stop a tumor from over-producing cortisol. Go to Camp Cushie and find out what your biochemistry is. Then you will know with no doubt if you need more than just anti-inflammatory meds. It's paid for and arranged now. Will there be another opportunity later? Go now. Get well sooner. Link to comment Share on other sites More sharing options...
Over 2000 Posts betseebee Posted July 7, 2010 Over 2000 Posts Report Share Posted July 7, 2010 Lisa, It sounds like the trip to Seattle is the best thing you can do for yourself. Although your family is well meaning, they simply don't understand Cushing's like you do and must be thinking that you didn't have Cushing's if you weren't cured after your first surgery. I have a lot of family members who think the same way. I have gotten high cortisol results post-surgery and still have Cushing's symptoms (after a short, six-week cure). I know how tempting it can be to want to believe you have something other than Cushing's. Best of luck. You are in my prayers. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club OregonChick Posted July 7, 2010 Member of the 1000 Post Club Report Share Posted July 7, 2010 Interesting, none of those 2 medications alter ACTH or cortisol (that I could find). Sometimes people have to throw their 2 cents in and you have to smile, nod, take a bite, complement, get back to what you're doing. Before I got cleared for surgery I had a PCP insist I take medication for each symptom rather than have surgery. It just gets ridiculous. It's like remodeling the living room with a big white elephant and it's pile of poo is standing there. "But you could add blinds, and pain the walls the same color as the elephant, that would solve it!" "but I want to remove the elephant..." Link to comment Share on other sites More sharing options...
LisaFriday Posted July 7, 2010 Author Report Share Posted July 7, 2010 Thank you all so much for understanding my predicament and giving such great advice. After reading a few of your responses to my original post, I cried to my husband last night. I am trying to get him to understand that I must go to Camp Cushie on Sunday. Happy 41: you are completely correct. I have had NO testing since my one/two week post op visit in April. I thought I was headed to Seattle and figured I could wait to get ALL the numbers/facts I needed then. NOW, if I do not go, my husband wants me to ask my Dr. friend to do many of the tests that they would be doing in Seattle. He just really does not understand all of this. He is so concerned that I will get out there and decide to have my second "BRAIN SURGERY"... (I KNOW Pit Surgery is NOT Brain Surgery, that is what HE calls it every time... he thinks it is funny.... ....) I am thankful that he is so concerned about my having another surgery... Because I have had lots in the past 5-6 years... 4 Lower Back Surgeries (2 Spinal Fusions) Gastric Bypass this past Oct IPSS (He considered that a major surgery b/c I was really scared of it b/c I was awake...normally I am NEVER scared of surgery) Umbilical Hernia Repair March 2010 Pit Surgery April 7, 2010 So, he has a right to think our 'surgery luck' may run out... and this may be the ONE that I actually have complications. Anyway, we decided last night that if: Seattle has not filled my Camp Cushie (5 days of intensive Cushings Disease testing) spot yet, AND IF: These new medications that I am now taking: Meloxicam and Famciclovir do not keep me from being tested next week AND IF: I promise to NOT have a second Pit Surgery while I am out there (b/c Dr. L and I had planned for me to do so if the tests said I needed to...that would save me a 2nd trip to Seattle) THEN, I could go... So, I have put in phone calls to Seattle to see if the spot has been filled and if these new meds are OK to continue to take during the week of tests... I will post later today with how this silly little DRAMA of mine unfolds! Again, thanks for all of you here! It is so nice to know that you can be in a place where you are supported and understood. This disease has made me such a 'recluse'. I hide from so many people who love me because they just do not understand! So, thanks! Lisa in Alabama Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club happy41 Posted July 7, 2010 Member of the 1000 Post Club Report Share Posted July 7, 2010 With your history, I think that psychologically, it would be really important to go home and think about your options rather than rush right into surgery. I didn't realize that you have had two spinal fusions. Was this the result of a car accident or loss of bone causing problems, because the second can be caused by Cushings. Maybe this will help your husband. Doctors are very specialized and what we really want from them is their experience. If you wanted to file a patent, you wouldn't hire a lawyer who does divorces or DUIs. The divorce lawyer is going to know what happens in divorces and wht the pitfalls there are. JD or no, he/she is going to be clueless about what happens in the patent office. The divorce lawyer is probably not going to know a whole lot more than you, and will cost you alot of money. Or on a more manly note, you aren't going to hire an electrician to do serious plumbing or vice verse. Both may work in a house, but they are not interchangeable -- at least if you want to have work done to code. As you said, this doctor doesn't know anything about Cushings. So, even if you tell him what tests to order (and are you really sure you know what tests to order for yourself), what are you going to do if you get an abnormal response? He's not going to know how to get approval of GH from the insurer, he's not going to know what to dose, he's not going to know what follow up tests to order to make sure the treatment is working and dosed properly. If you have Cushings, a neurosurgeon is not going to take a referral from an abdominal surgeon -- he's going to want a referral from an endo. Would you really trust a doctor to self-refer on an adrenalectomy? Who's going to monitor you steroid levels after surgery? If you want to be your own doctor and write your own prescriptions, why not just go down to Mexico and buy your own drugs off of the street? Make your own guess on the dosing. Monitor yourself with mail order tests. Because in terms of safety level, I don't think there is much of a difference between being your own doctor and being your own doctor and having some shill with an MD sign off on your labs and prescriptions. Your husband wouldn't want you going to Mexico and coming up with your own home brew treatment, would he? If you don't still have cushings, he is not going to be able to say so with the definitiveness that will allow you to push other doctors to pursue another diagnosis and not say -- well, but you had cushings, are you sure you aren't just not cured?" Link to comment Share on other sites More sharing options...
LisaFriday Posted July 7, 2010 Author Report Share Posted July 7, 2010 Happy41: Wonderful advice and fantastic examples that not only my husband, but, my friends and family can relate to and understand. Thank you. As for the back surgeries, well, no trauma initiated it... Just one day my back 'popped' and I was unable to stand up fully erect. It was awful... a huge disc ruptured onto my sciatic nerve. Then, it did it again and again... When my neurosurgeon (for my back) learned of my having been diagnosed with Cushings, he said that the increased amount of steroids (cortisol) running through my body may be the cause of my bone degeneration. I have phone calls into Seattle now and the clock seems to be at a stand still... More waiting... I am convinced that God is trying to teach me patience with this disease! Again, Happy41, thank you for your advice... Lisa in Alabama Link to comment Share on other sites More sharing options...
Over 2000 Posts LilDickens Posted July 7, 2010 Over 2000 Posts Report Share Posted July 7, 2010 Im so stressed today, hope I read things right.... GO get tested ! Yes! Whoohoo! Link to comment Share on other sites More sharing options...
Over 2000 Posts ADDflower Posted July 8, 2010 Over 2000 Posts Report Share Posted July 8, 2010 I took a look at the link you provided and the study article (which was rejected for publication, although that doesn't necessarily mean anything... the doctor writes that he's including peer reviews which he failed to do) has nothing to do with NSAIDs (which is what you are taking) but antivirals. SO... I realllllly don't understand. Link to comment Share on other sites More sharing options...
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